“Litigating for Our Childrens Rights to Education: What else could I do with my time?”

This blog post is based on an Invited Editorial in PEOPLE WITH DISABILITIES magazine, New Jersey Developmental Disabilities Council Sept 2000 - Article by Dr. Ilise L. Feitshans JD, ScM and DIR

It sounds sexist but true: educating my learning disabled son disproportionately consumes my family’s resources – compared to the time, cash and lost income I spend on the academic life of my gifted, beautiful daughter who is four years younger. She is easy to educate; bright-eyed and pretty, she loves learning and absorbs new data, sounds and new experiences like a sponge, able to recall moments from a trip when she was five years old as if they just happened.

But every word of my son’s education has been a struggle, starting when his disability was recognized at age three. When he entered a very pricey segregated setting for his schooling at the age of nine, he was unable to read. The tens of thousands of dollars that school cost me then now seems like a bargain, because without intensive training, he would have been illiterate.

Unfortunately, few professionals have been trained to understand his needs in the public school inclusion setting. I have been filling the void with my own time, finances and expertise as a college professor, in order to get him an equal opportunity to an education. Although education, in the USA is NOT a constitutional right, the right to equal opportunity under the 14th Amendment’s due process clause of the US Constitution is indeed a right. Rights enforceable under not one or two but three federal statutes: Vocational Rehabilitation Act ("Rehab Act"), Individuals With Disabilities Education Act (IDEA) and the Americans with Disabilities Act (ADA). And, there is an unmistakable trend expanding these rights in US Supreme Court law.

But what does this mean everyday?

Unfortunately, it means very little.

For my son, it would mean nothing, but for the fact that I give up time from my professional endeavors to write, fax to officials and speak with teachers daily. Hardly a day goes by that I haven’t spent two three or five hours writing or conversing with someone to procure necessary services, while my daughter goes sailing through her coursework, resigned to her fate of getting significantly less of my attention by stating, as she did when she gave testimony to the US Department of Education February 16, 2000, "I love my brother but I wish he was not LD."

For example, look at the undue complexity in attempting to implement one fraction of his IEP: the requirement for ungraded spelling. Foreign language was not listed on the IEP. How can I explain to the French teacher that he must not be graded in spelling in another language if he cannot even master spelling in his native tongue? The hardwiring is simply not there.

Even after he went to Paris where his sister, four years younger could, converse with mom’s old friends, he could barely recall the syllabic order for merci and bonjour. While foreign words came easily to his younger sister and rolled magically out of her mouth with only a slight accent, he was frustratingly speechless in a foreign land. How could such a child be expected to write and spell for an exam? And reading, for him it was all as it was for me in China – pictograms of concepts and words, with no discernible pattern or meaning to my eyes. I explained this to the French teacher, speaking to her in French that I speak fluently at the university level, and completing my diatribe with my exasperation at the fact that so few of the native born people in the USA bother to learn a second language, but also with the bittersweet understanding that my son will be lucky if he can master reading and writing in one language in his lifetime. She might have other students in her class, perhaps unidentified because of stigma or ignorance, who have learning problems and who become behavior problems to her because of their frustration and boredom of being forced into a subject they cannot understand, who could benefit from non-verbal exposure to French culture. I suggested she should try a multi-sensory approach to French language and culture – a culture particularly rich in non-verbal treats to the senses from food, fine cinema, architecture, clothes, perfumes and paintings. I suggested that she offer non-reading assignments that engage her students in the essence of French culture.

And she asked me, "So, do you want to design the course? What assignment would you like me to give him?" Well I knew I could not refuse to assist this teacher who should have already been schooled and trained in the micromanagement of inclusion classrooms, so I worked with her until we devised a manageable assignment for my son. But I was disturbed by this commotion – the time it took out of my day to fight about a silly inappropriate spelling test; the fact that I was obligated by circumstances to micromanage her failure to understand inclusion teaching and that if I had not already been an expert in the subject, there would have never been a suitable assignment for my son. This would not have been nearly so bothersome to me had it been the only instance. But this detailed level of mislabeled parental involvement is the hallmark of defending the rights to an education for the learning disabled.

Parental involvement is not about sitting across from the child at the kitchen table doing assignments that should have been finished in resource room. Parental involvement is having access to courses and curricular choices; making life-transforming decisions about the future education of one’s own child.

My parents did a great job – I went from public school to Ivy League college and even have taught in Ivy League schools at the graduate level. They never did my homework – I usually did it in class or on the subway commuting home. They knew whether it was done or not, and they gave me private instruction on weekends in my favorite subjects; they were hardly uninvolved. But they did not hover over my assignments! Indeed my mother, who was a special education teacher, would have viewed such hands-on parental participation as unethically attempting to mask a child’s inadequacies, with the shameful consequence that a teacher would not know which materials to review before proceeding with new topics.

What else would I do with my time?

Well, I gave a lecture at Yale Medical School on February 1, 2000 about the future of occupational health laws, and I promised at that time I would soon publish my lecture as part of a book. The next week, I found out the school district had failed to include my son in a program for gifted youth, and there were the US Department of Education hearings about the need for oversight in our district. A hard struggle to get the school district’s assistance in the application process followed, and I have not touched my 250-page final draft since.

My son’s father refuses to visit him and therefore avoids coping with these daily struggles, leaving me to bear alone the economic burden of the lost opportunity costs, momentum and publicity for these misspent time values. Am I suggesting that somehow my son or his education is not worth it? Heavens, no! He is gifted in math and he has an obsessive ability to pursue understanding of extremely complex concepts, as a curious bi-product of his disability. His gifts will someday become the lauded benefit to humanity that builds a better world. But my unfinished writing, the disruption of my professional schedule to perform the work of education professionals — for that timevalue I should be paid. Who knows? Perhaps if the professional educators would educate my son and I would be left to my writing and lectures, we might have a better, happier or more balanced world.

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